Sweden Pushes for Improved Care for Rare Diseases Following Seminar
Sweden holds a crucial seminar to enhance care for rare diseases and proposes a national strategy to improve treatment access.
Key Points
- • Seminar in Parliament highlights gaps in rare disease care.
- • Only 30% of rare disease drugs are accessible to Swedish patients.
- • Calls for a national strategy and better coordination in healthcare.
- • Importance of early detection through newborn screening underscored.
On June 10, 2025, a seminar titled "How to Make Sweden the Best Country for Rare Health Conditions" was held in the Swedish Parliament, emphasizing the urgent need to enhance care and treatment options for patients with rare diseases. Organized by Anders W Jonsson and Lina Nordquist of the Social Committee, the event brought together various stakeholders, including patients, healthcare professionals, and pharmaceutical companies, to discuss critical gaps in care and the implementation of a national strategy.
Key figures such as Oskar Ahlberg, vice chairman of the Rare Diagnosis Federation, shared personal testimonies that underscored the challenges faced by patients. He pointed out that while the number of individuals with rare diseases is considerable—almost matching those with cancer—Sweden’s healthcare system lacks the necessary focus and resources allocated to their treatment. Currently, only 30% of available medications for rare diseases reach Swedish patients, illustrating a substantial lag compared to other countries, as noted by Jenni Nordborg from Lif.
The seminar also brought attention to the role of the national newborn screening program, established in 1965, as a crucial preventive measure for early diagnosis of severe conditions. Rula Zain-Luqman, coordinator for rare diagnosis centers, called for the creation of formal expert teams to standardize care across the healthcare system.
Discussions concluded with a strong call for urgent action to implement the proposed strategies, ensuring equitable and efficient access to care for patients with rare diseases throughout Sweden. A coordinated effort is expected to improve diagnostics and treatment pathways, enabling better outcomes for affected individuals.